Tyson Hugh Hooper

Tyson Hugh Hooper
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things!

Sunday, March 29, 2015

Friday and Saturday...

Warning: no time to proof read - just posting so you can finally have an update!  :-)

I have had so very little time or energy.  I have wanted to blog the last two nights to update, but at the end of the day I had nothing left!  So this morning, while I sit here hooked up to a pump, I figured I could at least hop on and give everyone a quick run down and some pictures from Friday and Saturday.  The pictures are out of order, so I'll just write under each one to fill you in on what they are.  Here is our latest news:

Friday and Saturday he got rave reviews from rounds and his attending said we could try breast milk from a nipple and then bottle.  He just gets a few swallows, but that is a start.  Saturday he had done so well Friday that they doubled his breast milk intake for the day.  For those of you who prayed for my milk - thank you!  We serve an almighty God and he is blessing me with the exact amount of milk that Ty needs.  It is awesome!  (back story, for those who don't know:  I wanted SO BAD to breast feed Ava Grace - we tried EVERYTHING and my milk never came in,   So me having any milk is a blessing and having enough to actually feed Ty is a miracle!)  He doesn't get to go to the breast because they have to measure everything,  but that is ok with us, we are just exciting he is getting mama's milk!

They have removed his IV and put in a pic line.  This is like a long IV that threads through his upper arm all the way to a vein just outside his heart. This is much more stable, so we can now move him home and hold him more!  Very exciting.

Chris and I have both changed his diapers now.  We have also both fed him - and let me just say our boy was born to eat!  Despite not having anything in his mouth but a paci and no chance to develop his sucking instinct for the first two days of life, with very little prompting he figured it out and gulped the milk down!

His coarctation is long, but still in the range that they can do an end-to-end repair and do not have to use other parts.  Unfortunately it is big enough that the cardiology team decided it would be best to go in through his chest.  His first open heart surgery is on the board for Monday.  They do have another "major thing" (in their words) on Monday, so he might get bumped to Tuesday... but for now the plan is Monday at some point.

Yesterday for the first time he woke up and was very alert when I went to see him in the morning.  Then he slept all day and woke up to be alert and eat when Chris and I went back in the evening to see him!  It was so fun!  I'll post a couple videos at the end I got a couple pictures of him with eyes open.

Overall he is doing so well.  Not once have they given us bad news or had to give him oxygen.  Praise Jesus for his overall great health!  he also hardly ever fusses or cries, but the boy does NOT like getting a diaper change... that will get him tuned up every time.  

So, now for the good stuff!  Check out our sweet little guy:

 Friday with IV still in his arm.  LOVING his golfer hat!

 Second time getting milk through a nipple  - it is such a small amount that they just drop it into the nipple with a syringe.

Actual milk and mama pumped!  You have no idea how exciting it was to turn this in compared to my other bottles with literally half  a teaspoon in them!  When they doubled his intake, my output doubled almost exactly. What an amazing God we serve! 

OH!  Forgot to mention above that we were discharged.  We weren't sure what to do since home is an hour away in good traffic and longer in bad.  Our nurse really pushed us to consider Ronald McDonald House.  I have heard of people waiting so long on the list to get a room.  Our social worker put us on the list and our nurse told us to call every day to see if our name was up.  I thought it would never happen!  I called the day of discharge at 1:00 and asked and she said they had our room ready and we could check in at 3:00.  Again - a miracle.  Thank you Jesus. This place is amazing!  So much for the kids to do, so helpful.  We are so blessed to be here and can't wait until we are able to give back in so many ways!

 This is after he got his IV out.  The pic line is in his upper arm and his hand is just bandaged from where they took out the IV.  He gave me a little peek at those eyes too!

A wonderful group of people provided lunch at the house yesterday complete with dessert!  Funfetti cake with sprinkles - yes please!  Ava Grace, as you can see, is loving it! 

Snoozing on Friday. 

Awake finally!!!  A bath, diaper change, and bottle did the trick and mommy got to see those beautiful baby eyes! 

MAD!  he doesn't like to be moved around, so getting him up to eat makes him mad.  Plus he felt teased a little because she was showing us the proper way to give a bottle to a NICU baby.

 He doesn't care about the proper way - he just wants the good stuff.

Last night Daddy got to visit and see him be alert with his eyes open! 

 And he had to get some kisses... we like lots of kisses!

It was has been a really hard last few days.  So worth it though!  

Yesterday I had a hurricane of hormones.  I cried pretty much all day long.  Hopefully I'll be better today because that made my head hurt.  I told Chris and Mom that I'm pretty sure that would have happened even if we were all healthy and home - just normal pregnancy hormones regulating and some sleep deprivation, but it was awful still the same.  Anxiety about Monday is setting in, please pray for a peace that can only come from our savior.  Thank you Lord for mom and all she is doing to keep us going.  She has slept at the hospital, at the Ronald McD House, and at our house.  I know she must be worn out from all the shuffling.  I don't know how we would manage without extra help!  I am so thankful for Chris who has been all over creation trying to keep our little family running as "normal" as possible - getting Lily to and from school and her volleyball games and taking her out for special time!  He's done an amazing job seeing to the every day tasks and this has meant a lot of time away from Ty and from me and I know that has to be hard.  Pray for Ava Grace - she has been shuffled too!  You can certainly tell that she misses the undivided attention of Mommy and Daddy and she is pretty clingy when we are together.  I worry about her, but I know God will take care of her too and this is just a short phase we have to get through until we can take Ty home with us!  One last prayer - the NICU said they might send Ty up to PCICU early or make an exception in the NICU so the girls can see Ty before he has surgery.  If that is going to happen, it would have to be today since Lily goes back to school in the morning.  I think that would be good for both of them and I really hope they at lest get to see him, even if only through a window, before Monday!

Today is a new day.  I have yet to establish balance of time with Ty and the girls and Chris.  I'm wondering if it is even possible, but I am going to try.  I know we have friends visiting this afternoon and an Easter Egg hunt at the Ronald McD house!  The girls are excited about that and its nice to have "normal" fun stuff to do with them so they don't feel overshadowed by brother!  Hoping we have another good day with Ty.  I'll updates as soon as I am able.  For now, I'm up and getting ready to head over for morning rounds!  Thank you again for the prayers and support - we feel very loved on and very grateful!


Liberty Church said...

God is so good!! Prayer works and I'm so happy to see this in your blog.

Shirley said...

Sounds like everything is going as well as it can! I will pray for all your family at Church today.